I have always known that I wanted kids especially going into my 30's. Well, I'm 39 now and currently on Prednisone, Plaquenil and Cellcept to treat my SLE and lupus nephritis. I know that I can't get pregnant on Cellcept since it's a class D drug but my doctor is hopefully going to take me off of it sometime this year since my kidneys have greatly improved and are functioning normally now. I had one miscarriage in 2011 that was considered a chemical pregnancy and ever since then, I have been mourning the loss of it.

I guess my concerns right now are if I can even get pregnant because of my age and having been on Cellcept and Methothrexate (in the past). Also, am I going to be able to handle a baby with my lupus. But regardless, I still want to have a child. As much as I am always happy to hear others having babies, I can't help but feel a sting wishing that that was me.

Right now I am doing a lot of wishful thinking and have gone to a fertility specialist to get my body checked out. I don't think I want to go through any type of fertility treatments because I'm afraid of how my lupus is going to react. I guess going there is just my way of knowing if it's even possible for me to get pregnant again. I want to go see the high risk OB I saw after my miscarriage for another pre-pregnancy consult but I find myself continuing to try to talk myself out of it for feeling silly going when I don't know if I can even get pregnant again.

Big surprise, since the last time I posted, after trying to continue weaning off Prednisone after 11mg, I ended up flaring with fevers. Needless to say, my nephrologist decided to start me over at 20mg again. Sure I was disappointed but ironically happy that my fevers subsided.

After taking to my nephrologist, we decided to continue weaning off again but at a slower pace...1mg every 3 weeks. With my fingers crossed, it's been going good! I'm currently at 13mg and planning on weaning down to 12mg next week if all goes well. I had a fever last week of 102.3 which is quite high for me. After a couple of doses of extra strength Tylenol, my fever lasted for only a day. Everyday since then, I've been slowly recovering from it. According to my Rheumy, he believes my body was trying to fight an infection and didn't believe it was my lupus. He said this because it only lasted a day.

So I experienced something recently that I've been feeling extremely guilty for. On a weekend trip with the family at a cabin by the lake, there were enough beds to accommodate everyone. However, a couple of the rooms were in the basement where the temperature was really cold. Being one of the first to get there, my husband chose one of those rooms for us for the privacy. I was very hesitant about it. One, because cold temperatures makes my bones ache and two, I have a tendency to feel sick like I having a head cold or worse, the flu. We ended up working it out that we would stay in one of the basement rooms and were going to use the one heater. The first night went exceptionally well. We were both very comfortable in our room. Well, the next day, all the others were arriving and when rooms were brought up, I was told an older member of the family may have to sleep in the basement also...in the room next to ours. Uh oh...was I expected to give up the heater? My heart wanted to say "yes" but my brain, well, that's another story. Do I give up the heater (there was only one) and suffer for the next few days or not say anything and just keep the heater and be able to continue to function? A whirlwind of Pros and Cons were running through my head.

This may seem like I'm completely over thinking things but you see, in my Lupie mind, I think of what things I have to do in the next few days that I have to be really mentally alert and physically able for. Come Monday, it's work. Things there are pretty crazy with layoffs and and more increased workloads. Also, I'm in the middle of selling my old condo. Any day now my condo could close & I still have to clean it up for the buyers before they move in. Then there's the weekend after where we had already planned a BBQ for an aunt that's here to visit from another country. My house has to be cleaned and grocery shopping needs to be done. It may not sound like much to do for a healthy person but to someone with lupus, it can be. So, do I risk letting go of that heater?

End result, I couldn't...and I feel extremely guilty about it.

I struggle with this a lot. And a lot of times I don't even have the energy to explain the thoughts that go through my head to anyone regarding my actions. For me personally, sometimes I don't think some people would understand. (There has been a time or two in the past where I have gotten criticized or given a funny look when I have tried to explain.) I also feel that I've had this illness for a long time and people are tired of me always blaming everything on my lupus. Shoot, I even get tired of it.

So am I right to feel guilty for making this decision?

Is this a form of being selfish and high maintenance or being responsible for my own health?

It's been quite a few weeks since I posted last. I just started 11mg two days ago. Since my last post, I have seen my Rheumatologist and my Nephrologist. I informed my Rheumy about what has taken place since I last saw him a few months ago and how I was currently in the process of weaning off my steroids. He thought I was doing things properly by weaning off every 2 weeks but also suggested weaning off every 3 weeks instead if I start to feel increased effects of the weaning off process. I took his advice and decided to wean off every 3 weeks. Of course, I informed my Nephrologist also that this is what I was doing. He was on board with it as well.

The good news from both appointments was that the cocktail mix of Cellcept and Prednisone has worked really well for me and my kidneys are functioning at a normal level!! My serum creatinine levels were at 0.84 mg/dl. (The normal range for women for this is 0.5 to 1.0 mg/dl. For men, it is 0.7 mg/dl to 1.2 mg/dl.)
As of today, after weaning down to 11mg of Prednisone, my joints have only been slightly achy and I'm just a little bit tired. This is nothing like how I was feeling when I would stay at a certain dose for only a week or two. I'm still getting brain fog though. Sometimes I think it could also be caused by the nice weather too...haha!
My little puppy (though not that little anymore...from 3 lbs at 7 weeks old to 10.5 lbs at 5 months old) has been a lot easier to take care of.

She has gotten the hang of potty training and is barking at the door to let us know when she needs to go out. During the times she has too much energy for me, I take her to doggy daycare while I am at work to play with other dogs/puppies. Because of the cost, I only am able to do once every couple of weeks though but every little thing helps!
I can't even express how happy I am that the medications have worked for me. I haven't felt this "normal" in such a long time.

As I mentioned in a previous post, my workplace has made quite a few changes. Sometimes change can be a good thing but other times, it can be really scary. I learned of a new change last week.

The firm held a meeting where it was imperative that everyone attend. It turned out to be a meeting about a change in our health insurance. This change has proven to be a VERY scary one for me. For one, although I pay a premium every month for my current insurance, it has been completely worth it. Right now, I have a PPO Plan. I'm able to see whatever physician I like and go when I need to, without having to get any referrals. I pay a very reasonable co-pay for every physician I see and every test and procedure I have. My medication co-pays are quite reasonable as well. In my heart of hearts, I don't think I could have gotten better like I have without a plan like this. What more can a chronically sick person ask for?
Well now, at the meeting, we were given an option between three different healthcare plans: 1) HMO Base Plan, 2) HMO with a Heath Savings Account and 3) PPO with a Health Savings Account. I have never dealt with a Health Savings Account before but it seems like a really good thing from the information I was given. Upon everything I've read and researched about each plan, I would love to try one with a Health Savings Account, as they offer great coverage and my company makes a contribution (so very grateful for that). However, those plans require me to pay a premium and pay a high deductible before the insurance kicks in and any of my medications are covered. Two of my numerous medications cost an average of $150 a month each to fill. Also, when checking the prices of all my doctors appointments and procedures within the last 90 days, I found that I would have met that deductible. Great right? Yes of course, IF only I was wealthy enough to cover that deductible out of pocket in that short amount of time EVERY year. Unfortunately for me, I am not in a position where I can afford this. So, needless to say, I plan on choosing the HMO Base Plan. With this plan, I would always be able to get my prescriptions on a co-pay basis. I would still have to meet a deductible, however, that deductible amount isn't as high as the ones with a Health Savings Account.

Though I'm extremely grateful that I have insurance period, I'm quite weary about how this new one is going to work for a chronically ill person such as myself. How is this new plan going to affect the quality of care I am receiving now? On a positive note though, at least I have insurance. Plus, I am able to keep my primary care physician and most of my specialists who have been with me since Day 1. The unknown is such a scary thing...

So it's been two weeks since my last post. I should be on 13mg this week but instead I'm just starting 14mg today. After weaning down to 15 mg, my body felt so hit and I was extremely exhausted, I decided to stay on 15mg for 2 weeks instead of one. I can't remember if I mentioned this before or not but I had an appointment with another specialist, my pulmonologist, whom I've been seeing since I was first diagnosed with Lupus. (He was the one who performed my thoracenthesis.) When I told him the plan of weaning off of Prednisone 1mg a week, his reaction was the same as mine. He was very hesitant. After treating me for the last 7 years, he thought that was a little too fast. He's seen what happens to me when I wean off too fast. He suggested weaning off 1mg every 2 weeks. To be fair, I told him I would do that if I didn't feel well when I decreased my dosage. I took his advice when I hit 15mg and I'm so glad I did. I'm not sure why but the first week of 15mg was rough. As I mentioned before, I was extremely exhausted. I also couldn't think straight like I was in a fog all day. Again, my joints were sore. I made it through though.

I fully intend on telling my Nephrologist about what I have been doing when I see him in a few days.

On my last appointment with my Nephrologist, I finally got the OK to start weaning off my Prednisone. He wanted me to wean off slowly....1mg a week until I'm no longer on Prednisone at all. The idea of this is a bittersweet thing for me. For one, I've been anxious to get off of it after being on 20mg a day for the last six months. Who wouldn't be? The side effects of Prednisone are crazy sometimes. However, secondly, every time I wean off too fast, I start to flare again. I always worry if my body is going to accept not being on as much Prednisone. Lastly, in the last 6 years, I've never been able to get off of Prednisone at all without flaring again. Needless to say, I'm very nervous about it.

I'm only down to 16mg this week but I could already feel the effects of it. The first couple of days after weaning down, I start to get really tired. The energy is just depleted from my body. I start to feel "not well" and my joints begin to swell and hurt, especially my knees. It's not the best feeling when I'm trying to manage a department at work and have to keep up at home...with a new puppy.The mornings are the hardest being so tired and trying to get ready for the day. It takes me forever to get moving. The first few days makes me feel "foggy" too. At work, I've been trying to offset this by writing everything on Post-It Notes so that I don't forget anything. This has actually been a habit for me for the last few years and has worked quite well.

There have been lots of changes at work. The firm has let a few people go and others have been shifted to other departments. I lost two people in my department and received one new one. I started training my new employee this week. Of course, it lands on the day after I started weaning down, right? Needless to say, it was a little tough to train when I wasn't feeling well and would have some "foggy" moments. I also have good reason to believe that our insurance may be changing. I have great insurance now where I have the option of seeing any physician I like. Because of this, I feel I have some great doctors. But now, I may be losing some of them as they only take certain insurances. Well, I guess I'll cross that bridge when I get to it.

Other stresses have been making it difficult for me to deal with the weaning off too. I had a difficult time with the new puppy last night. I had just come home from a hard day at work to a 12 week old puppy that had so much energy that she didn't know what to do with herself. Then there's me that had zero energy and just wanted to eat dinner and go to bed. Playing fetch with her helps but taking her for a walk wasn't an option since it had been raining and thundering like crazy the last couple of days. Thank goodness that my husband was home to be able to play with her too for a little bit. I take her to puppy classes every Wednesday so at there's at least one day a week she gets tired out. Another good thing is that she sleeps through the night now and that means no more broken sleep for me.

One good thing about being so tired with everything going on is that I no longer have to rely on taking a sleeping aid (Ambien) to go to sleep and stay asleep anymore. I'm so very happy about that because I've been wanting to stop taking it for so long.

Weaning off of Prednisone isn't easy but I'm hoping to be able to manage it well enough to keep living a "normal" life.

About Me

I was diagnosed with SLE in May 2007 after spending a few days in the hospital with pleurisy (inflammation of the lining of the lungs and chest) and pericarditis (a condition in which the sac-like covering around the
heart becomes inflamed). Little did I know how much my life was going to change after that day...